Many older people and people with disabilities are assisted with everyday activities by relatives or friends.

Many older people and people with a disability who are living at home receive informal assistance from family, and sometimes from friends and neighbours. In 2003, 2.5 million people (16% of the population aged 15 years and over) provided such care to 2.1 million people. Over the last few decades, a government and community focus on the needs of people with disabilities and older people has highlighted both the contributions of carers and concerns about their wellbeing. In the context of an ageing population, with trends towards later childbearing, smaller family sizes, increased family breakdown and increased labour force participation by women, concern has also focused on whether informal care can keep pace with the greater numbers of older people requiring care. (endnote 1) (endnote 2)

Carers

Information in this article is based on the ABS 2003 Survey of Disability, Ageing and Carers which collected information on the characteristics of people with disability; people aged 60 years or over; and people who provide assistance to them. The scope of the article is limited to persons living in households.

Informal assistance (or care) in this article comprises unpaid help or supervision by family, friends or neighbours and also paid help provided by family or friends living in the same household. It contrasts to formal assistance which comprises paid or unpaid help or supervision provided through an organisation (government or private, including both not for profit and commercial); and other paid help or supervision provided by persons other than family, friends or neighbours.

Carer in this article refers to a person aged 15 years or over who provides ongoing informal help or supervision to persons with disabilities or long term health conditions, or to persons aged 60 years and over. The help provided must have lasted or be expected to last for at least 6 months. Carers who assist someone in another household are identified on the basis that they provide help with 'everyday sorts of activities' without further specification. Carers who assist someone in the same household are identified on the basis that they provide assistance with one or more of these activities: communication, health care, housework, meal preparation, mobility, paperwork, property maintenance, self care and transport. Primary carer refers to a person aged 15 years or over who provides the majority of the ongoing informal assistance to a person with a disability who has a limitation in one of the core activity areas of self care, communication or mobility. Person cared for in this article refers to the main recipient of care (some carers assisted more than one person).

Carers - 2003

CARING OVER THE LIFECYCLE

Although some care is provided by friends, caring is largely a family role. Of all older people and people with a disability who received informal care in 2003, 92% were assisted by family and 17% by friends. That is, only 8% were helped solely by friends.
In 2003, the likelihood of being a carer increased with age to peak in the age group 55-64 years. More than one in five people of this age were carers (22%). This may reflect the new family ties people form through partnering and having children, and the fact that as people age, so do their close relatives, making them more likely to need care.
In the youngest age group, 15-24 years, women were slightly more likely than men to be carers. There was a more substantial difference between the proportions of women and men who were carers across the age range from 25-64 years (with a higher proportion of women than men as carers in each ten year age group). In the age group 65-74 years men were somewhat more likely than women to be carers. At very old ages (75 years and over) a substantially greater proportion of men than women were carers.
For women, the proportion who were carers peaked at age 55-64 years, whereas for men it continued to increase after these years. The peak for women may represent the age where the need for assistance of elderly parents converges with an increased likelihood of a husband having a disability. In contrast, it is in their role as husband that men are most likely to become a carer, and older men are more likely than men of other ages to have a wife requiring care. Also, once retired, they are more free to take on care.
In the oldest age range (75 years or over), much caring occurs between partners, but women are more likely than men to outlive their partners. Of men aged 75 years and over living in private households, 69% were living with a wife, while only 34% of women of that age were living with a husband. This contributes to the lower proportion of older women than older men who are carers.

PRIMARY CARERSSlightly less than one in five carers (19%) were primary carers (475,000 people). That is, they were the main carer of a person who was limited in carrying out the core everyday activities of mobility, communication or self-care. Both primary carers and the larger group of other carers (close to 2 million) contribute to the wellbeing of older people and people with disabilities. However, because they care for people who otherwise would have difficulty carrying out basic everyday activities, there is particular interest in primary carers: in the contribution they make, their wellbeing, labour force experiences, motivations and the support they receive in caring.

Primary carers were more likely than other carers to be assisting someone who lived in the same household (81% compared with 76%). As with caring as a whole, the likelihood of being a primary carer increased with age to peak at age 55-64 years, where one in twenty people were primary carers. However, rather than then declining, the likelihood of being a primary carer remained at around this level among the older age groups. Consequently, primary carers had a somewhat older age profile than other carers. The median age of primary carers was 52 years, compared with 47 years for other carers.
Primary carers were more likely than other carers to be female (71% compared with 50%) and less likely to be in the labour force (39% compared with 60%). Women not in the labour force were by far the largest single group among primary carers (44%). In contrast, men employed full-time were the largest single group among other carers (25%). Consistent with their lower labour force participation, primary carers had lower personal incomes than other carers (a median gross income of $237 per week compared with $327 per week) and were more likely to have a government pension or allowance as their main source of income (55% compared with 35%).

Carers(a) by labour force status and sex - 2003

CARER RATE(a) - 2003

Primary

Non-primary

Male

Female

Male

Female

Age (years)

%

%

%

%

15-24

*0.3

1.0

8.2

8.0

25-34

*0.6

2.4

8.8

9.7

35-44

1.2

4.4

12.1

15.1

45-54

2.4

6.2

13.9

16.2

55-64

2.5

7.6

17.0

16.5

65-74

3.6

5.7

18.5

13.5

75 and over

5.7

4.5

18.5

8.9

Total

1.7

4.3

12.6

12.6

'000

'000

'000

'000

Total

136.2

338.4

982.3

998.5

(a) Carers as a proportion of the population of each age group.

Source: ABS 2003 Survey of Disability, Ageing and Carers.

PRIMARY CARERS AND PAID WORK

People not in the labour force made up 61% of primary carers. A further 21% of primary carers were employed part-time and 17% full-time. The remaining 1% of primary carers were unemployed.
While caring responsibilities may be more likely to be taken up by people who are not in the labour force, some people leave the paid workforce, or change their hours, to accommodate caring. About 90,500 primary carers were not in the labour force but had been employed just prior to commencing the caring role. Of these, about half (51%) had left this employment in order to commence or increase care.
Caring can also impact on the working lives of employed carers in other ways. Just under one quarter (23%) of the 179,000 employed primary carers had reduced their standard work hours after commencing caring. Some employed primary carers took time off paid work on a more ad hoc basis: 11% took time off at least once a week; and 21% took time off less frequently. One in ten employed primary carers had, at some time, left their paid work for at least three consecutive months due to their caring role. However, 41% of employed primary carers had not taken any of the above actions to reduce paid work in order to care.
Some carers who were not in paid work would have liked to be. Of all primary carers aged under 65 years who were either not in the labour force or unemployed (186,000 people), 36% reported that they would like paid work while continuing in the caring role (66,800 people). The great majority of these wanted part-time work (80%). The most commonly reported barriers to paid work were a lack of alternative care arrangements or disruption to the person cared for (42%), age or loss of skills from being out of the workforce (17%) and difficulty in arranging work hours (16%).

WHAT'S INVOLVED IN CARING?
In 2003, 371,000 primary carers lived in the same household as the main person they cared for. In these cases, more specific information is available on the disabling conditions of the people cared for. Most of these primary carers assisted someone with a physical disability (58%), with the remainder caring for people with sensory (11%), intellectual (11%), psychological (9%) or speech (6%) disabilities. The great majority were assisting someone who was either profoundly (58%) or severely (34%) limited in carrying out the core everyday activities of mobility, communication or self care.
Almost three quarters of primary carers usually assisted the person they cared for with at least one mobility activity (74%), while around half assisted with self care (58%) and communication (47%). The specific mobility, communication or self care activity they were most likely to usually assist with was moving around away from home (64%). They were least likely to assist with more fundamental activities, such as toileting, or helping manage incontinence (16% and 12% respectively). Differences such as these are likely to reflect differences in how common various types of limitations are among people being cared for at home. Some carers had a wider range of tasks than others. For example, carers who assisted with the more fundamental activities, such as managing incontinence, were likely to also be assisting with other activities.
Helping people undertake core activities was only one aspect of the work of carers. Most primary carers assisted the person they cared for across a range of other areas of everyday life. Primary carers assisting people aged 15 years and over helped with emotional or cognitive tasks (92%); transport (86%); household tasks (83%); health care (65%); paperwork (61%) and property maintenance (61%). The 12% of primary carers caring for a child under 15 years would have provided the usual care children are given as well as assistance related to their disability.

Core activity activities primary carers usually assisted with - 2003

HOW MUCH CARING AND FOR HOW LONG?

Around 40% of primary carers had hours of caring at least equivalent to a traditional full-time paid job: 40 hours or more per week. A further 20% spent from 20 hours to less than 40 hours per week caring; and the remaining 40% spent under 20 hours per week caring.
The definition of primary carer requires that care had lasted or was expected to last at least six months and, in 2003, 96% of carers had been in the role for at least one year. This included 61% who had been carers for five years or more, and 12% who had been carers for 20 years or more.

Primary carers: reasons for caring - 2003

WHAT MOTIVATES CARERS?People tend to take on caring because of family bonds and a sense of necessity. Primary carers were almost always a relative of the person they assisted (98%), most commonly their wife (24%), mother (21%), daughter (18%) or husband (17%). The three leading reasons carers gave for taking on care, each given by at least one third of carers, were 'family responsibility' (58%), 'can provide better care' (39%) and 'emotional obligation' (34%). The less common reasons were those that expressed motivation less positively, ranging from 'no other family or friends available' (23%) to 'no other caring arrangement available' (12%).

Similar proportions of male and female carers gave the two leading reasons for taking on care ('family responsibility' and 'could provide better care'). A greater proportion of men than women gave each of the remaining reasons, from 'emotional obligation' to 'no other caring arrangement available' (and men, on average, gave more reasons than women). The greatest proportional difference was observed for 'Alternative care too costly', given by 28% of men and 13% of women.

There were differences in the reasons given according to the relationship to the person cared for. People caring for their parents were the carers most motivated by a sense of family responsibility (75%) or emotional obligation (47%). Spouses (47%) and parents (41%) were more likely than other carers to feel they could provide better care.

HEALTH AND WELLBEING OF CARERS

In respect of their overall physical and emotional wellbeing, more than two-thirds of primary carers reported no change due to the caring role (69%). However, 31% of primary carers did report that their health and wellbeing had changed (137,000 people).
More than a third of all primary carers frequently felt weary or lacking in energy (36%) or frequently felt worried or depressed (31%) and 15% frequently felt angry or resentful. About 16% of primary carers experienced frequent sleep interruptions which interfered with normal daily activities. Finally, 11% of primary carers (48,700 people) had been diagnosed with a stress related illness as a result of their caring role. These people were more likely than other primary carers to report all of the above negative effects, with frequently feeling worried or depressed the most common effect reported (79%).
People taking on care often have disabilities themselves. Close to 40% of primary carers reported that they had some kind of disability, compared with 21% of people aged 15 years and over who weren't primary carers. The higher rate of disability among primary carers partly reflected their older age profile.
However, in contrast to those they cared for, only 9% of all primary carers had a disability with a profound or severe core activity limitation. Consistent with this, 8% of primary carers were receiving help with core activities, as well as giving it.

...social relationships

Caring has the potential to affect a person's relationships with others, such as their family. Of primary carers who were married and caring for someone other than their partner, 41% reported either that their relationship with their partner was strained or that they and their partner lacked time alone together. However, more commonly, these carers reported that their relationship with their spouse was unaffected (46%) or that they had been brought closer together (13%).
Likewise, of primary carers who had other family members in their household (such as their children), 39% reported either that they had less time to spend with them or that their relationship with them was strained, but 49% reported their relationship was unaffected and 9% that they had been brought closer together.

In respect of relationships outside the family, more than half of primary carers reported no change in their circle of friends due to their caring role (59%), but 37% reported that they had lost touch with or changed their circle of friends due to the caring role. Finally, in respect of the person cared for, primary carers most commonly reported that their relationship was unaffected (45%), 37% had been brought closer together while 19% reported their relationship was strained.

SUPPORT FOR PRIMARY CARERS

When asked what their main source of assistance in the caring role was, primary carers most often nominated a relative or friend (34%), with a spouse or partner the most commonly named source of support (15%). Some nominated formal support providers (13%). Over half reported that they had no main source of support (53%). However, most of this latter group (44% of all carers) said they did not need assistance.
Having someone who can fill in for them can be of great help to primary carers. Over half of primary carers (55%) had an informal carer who could take their place at times. These were most often the daughter (30%), father (19%) or son (15%) of the person cared for. Just over a third of these fallback carers lived with the person cared for.
Arranging formal respite care for the person cared for allows carers time for other activities. These may include tasks related to caring, such as household shopping, as well as activities related to their own needs. However, not all carers may need or want respite care. In 2003, 87% of primary carers had never used respite care in respect of the person cared for, and 62% of these reported they did not need it. Other reasons for never having used respite care included that the person cared for did not want it (15%) or that the carer themselves did not want it (8%), while 6% had reasons to do with respite care not being available, suitable or affordable.
About 13% of primary carers had ever accessed respite care for the person they were currently caring for. In total, 17% of primary carers said they needed access (or further access) to respite care.

Carer payments and allowances

Income support targeted at carers was introduced in Australia in 1983, with arrangements for support amended several times since then. In 2005 (as in 2003 when the Survey of Disability, Ageing and Carers was conducted), income support was provided through a Carer payment and income could be supplemented with a Carer allowance.

Carer payment provides an income to people who cannot participate in the workforce because of the demands of their caring role. It is paid at the same rate as the disability pension. The carer payment is income tested and assets tested in regard to both the carer and the person cared for; and eligibility also depends on the disability, and care needs, of the person cared for.

Carer allowance is an income supplement for people looking after adults or children with severe disability. It is not income or assets tested, but eligibility is dependent on the disability, and care needs, of those cared for.

...income support

Taking on care can affect a person's financial situation. One quarter of primary carers reported that the main effect of the caring role on their financial situation had been that they had extra expenses while slightly less than one quarter reported that the main effect was a decrease in their income (23%). Of primary carers whose financial situation was affected in these ways (48%), 62% reported that they found it difficult to meet everyday expenses as a result of the changes to their financial situation.
In contrast, some primary carers reported an increase in income as the main effect on their financial situation (4%), while the most common response was that there had been no change in their financial situation (49%).
In 2003, two thirds of primary carers received some kind of Australian government pension, payment or allowance, including 55% of primary carers for whom this was the main income source. The carer payment was the most common type of income support received by primary carers (19%), followed by the Australian aged pension (17%), the parenting payment (10%) and the disability support pension (6%). The carers allowance (an income supplement) was received by 17% of primary carers.
In addition to the 19% of primary carers who were receiving the carer payment, a further 25% had looked into their eligibility for the payment but were not receiving it. In many cases this was because they were not eligible (39%), but it was mostly for other reasons. Of those who had not looked into eligibility, the most common reasons given were that they thought they would not be eligible (34%), that they did not think of themselves as a carer (20%), that they had not heard of the payment (13%), or that the payment was not necessary (12%).
ENDNOTES

1 Australian Institute of Health and Welfare 2004, Caring in Australia: assisting frail older people and people with a disability, AIWH Cat. No. AGE 41, AIHW, Canberra.

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